Addressing co-morbidities of spondyloarthritis through patient organization partnerships

ID: 

324

Session: 

Poster session 3

Date: 

Tuesday 18 September 2018 - 12:30 to 14:00

All authors in correct order:

Major G1, Walsh M1, Gerhart W1
1 Canadian Spondylitis Association, Canada
Presenting author and contact person

Presenting author:

Marilyn Walsh

Contact person:

Marilyn Walsh
Abstract text
Background: The Canadian Spondylitis Association (CSA) is a national non-profit patient association supporting and advocating for those living with spondyloarthritis (SpA). SpA describes a group of inflammatory arthritic diseases that attack the spine and, in some people, the joints of the arms and legs, among other areas. It can also involve the skin (psoriasis), intestines (Crohn’s, colitis) and eyes (uveitis). These co-morbidities (additional co-existing diseases), as well as others, in addition to the main SpA symptom of back pain, greatly compound to negatively affect a patient’s quality of life. Many patients have questions about these co-morbidities and are unsure of where to go for help.
Objectives: 1) To provide individuals living with co-morbidities, in addition to SpA, specific education and support needed to improve health outcomes. 2) Alert SpA patients of signs/symptoms of conditions they should be aware of. 3) Raise awareness of SpA within other patient organizations.
Methods: The CSA recently surveyed the SpA community for input on lived experience with regard to co-morbidities. After analysing results, identifying themes and setting priorities, we will collaborate with patient organizations representing these conditions. Partnerships will involve the exchange of reliable disease-specific information/support in the form of direct website links and articles/webinars/videos written and conducted by experts/medical advisors which can be promoted via social media platforms. In exchange, we will provide our direct link and reliable information regarding SpA to their memberships.
Results: We will report survey responses as well as progress in partnering with appropriate patient organizations.
Conclusions:Patients with SpA are at a higher risk of developing some co-morbidities than the general public. Addressing these conditions through partnerships with trusted patient organizations provides education and support not normally available through a disease-specific organization. The exchange of our information regarding SpA should raise awareness to patients who may be suffering with it, but be unaware, potentially leading to quicker diagnosis and improved quality of life.
Patient involvement: With the exception of the contributions of our Executive Director this initiative is fully driven by volunteers living with or affected by SpA.


Relevance to patients and consumers: 

This initiative directly addresses a key issue raised by members of the patient-led Canadian Spondylitis Association, namely, other conditions they live with in addition to inflammatory spinal arthritis (SpA) and the impact they have on their lives. Partnering with other trusted disease-specific patient organizations can provide our members with education and support necessary to potentially enhance shared decision making and lead to better health outcomes, thereby, increasing their quality of life. Raising awareness of other conditions individuals with SpA may develop in future allows patients to be vigilant and proactive in their care.